Filming Down Syndrome
Filming Down Syndrome
Abstract and Keywords
This chapter analyzes the representation of disability in two films from a Disability Studies perspective: Yo, también (2009, Antonio Pastor and Álvaro Naharro) and León y Olvido (2004, Xavier Bermúdez). Both films feature characters with disabilities played by actors with Down syndrome Pablo Pineda in Yo, también and Guillem Jiménez in León y Olvido. Despite each film's many successes, contrast between the two hinges on issues of autonomy, inclusion, rights, filmic representation and the notion of Disability Studies as a political project.
Yo, también (2009) and the Political Project of Disability Studies
Aquellas sociedades que dividen y apartan a las minorías son sociedades mutiladas.
[Those societies that separate and cordon off minorities are mutilated societies.]
Daniel, protagonist of Yo también
At the heart of Álvaro Pastor and Antonio Naharro's film, Yo, también [Me, Too] (2009), there is the seed of a wonderfully understated political project, pushing for the full social and economic inclusion of people with disabilities, developmental disabilities in particular. Screened at festivals in both San Sebastian and Cannes (2010), the film documents a crucial and transitional period in the life of Daniel, a 34-year-old Sevillano who has become Europe's first person with Down syndrome to have obtained a university degree (to this extent, the character reflects in broad strokes the life of university graduate and lead actor Pablo Pineda, who, like the character he portrays, also has Down syndrome). Daniel, whose portrayal won Pineda San Sebastian's Concha de Plata [Silver Shell Award] for Best Actor, takes a job in public administration advocating for people with disabilities, where he meets Laura (Lola Dueñas, winner of the Goya award for Best Lead Female Actor). Widely disseminated publicity images for the movie present Daniel and Laura laughing together on a beautiful day by the water, (p.2) intimatingthe possibility of an amorous relationship between the two that might complement their working relationship. Similarly, the official synopsis of the movie emphasizes this theme of love, recounting that ‘Ambos inician una relación de amistad que pronto llama la atención de su entorno laboral y familiar. Esta relación se convierte en un problema para Laura cuando Daniel se enamora de ella’ [The pair initiates a friendship that soon attracts the attention of their co-workers and families. This relationship becomes a problem for Laura when Daniel falls in love with her]. Nevertheless, Yo también is more than just a love story. The dual thrust of the film is to strongly advocate for equality for disabled people in the realms of both love and work; in the process, it provides filmic anchors for specific articles of the 2006 Convention on the Rights of People with Disabilities.
There is, in fact, a wide range of critical literature that can aid viewers in understanding the complexity of the film's advocacy for disabled populations. The following contextualization thus emphasizes the film's resonance with arguments by scholars who frame Disability Studies as a specifically political project, one that requires unmasking the power structures associated with terms such as ‘normalcy’ and ‘dependency’ (Carlson, ‘Cognitive Ableism’ 141; Davis, Enforcing Normalcy xii; Kittay, Jennings, and Wasunna 443; Sedgwick 23). It is also important to underscore the film's careful presentation of disability in general terms by pointing to criticism that has highlighted the often-skewed representations of disabled people that appear in popular media forms (Rapley, Riley). The analyses that follow thus turn, first, to the sphere of love, and second, to that of work, as a way of giving equal weight to both the film's love story and to the non-amorous aspects of its political project. In reality neither of these can be separated from the other, a case that is made compellingly by the film. Each of the subsequent sections once again makes a point of engaging with the growing body of critical literature on disability. In the end, Yo, también is a compelling point of entry into the long-unfolding struggle to secure for persons with developmental disabilities the right to make their own decisions and life choices—to enjoy the autonomy that the cognitively abled routinely take for granted.
The Politics of Disability Studies
Disability Studies is not merely an academic subject but is, in fact, a political movement that attempts to correct for a long history of academic neglect and social inequality. As Lennard J. Davis has written: (p.3)
The case must be made clear that studies about disability have not had historically the visibility of studies about race, class, or gender for complex as well as simple reasons. The simple reason is the general pervasiveness of discrimination and prejudice against people with disabilities leading to their marginalization as well as the marginalization of the study of disability. Progressives in and out of academia may pride themselves on being sensitive to race or gender, but they have been ‘ableist’ in dealing with the issue of disability. While race, for example, has become in the past twenty years a more than acceptable modality from which to theorize in the classroom and in print, a discourse, a critique, and a political struggle, disability has continued to be relegated to hospital hallways, physical therapy tables, and remedial classrooms. The civil rights movement, a long history of discussion of the issues around slavery, the attention demanded by the ‘problem’ of inner cities, and governmental discrimination have created a consciousness among progressives that legitimizes ethnicity as a topic for cultural study […] but it has been virtually impossible to have a person teaching about disability within the humanities. (‘Introduction’ 1)
From this perspective, the move to discuss disability in the classroom or publish books and articles on disability as it has been represented in cultural products—while still somewhat novel in the humanities and virtually non-existent in Hispanic Studies, specifically—is an important part of raising social awareness and political consciousness of the rights and struggles of populations with disabilities.
Another component of the present approach is to understand how simplistic are perspectives that frame disability as a deviation from the self-sufficiency and independence that presumably define a state of ‘normalcy.’ As noted feminist philosopher Licia Carlson has written, turning her attention to (in this case intellectual) disability, we must first dispense with the perspective of cognitive ableism, ‘a prejudice or attitude of bias in favor of the interests of individuals who possess certain cognitive abilities (or the potential for them) against those who are believed not to actually or potentially possess them’ (‘Cognitive Ableism’ 140; original emphasis). Her inversion of the terminology through which people with intellectual disabilities have been historically framed in terms of lack represents a challenge to the colonizing ideology embedded in the prevalent use of terms such as ‘feebleminded.’ Theorists such as Carlson and others have worked to establish broad-based critiques of marginality, forming connections between and across various marginalized groups in order to displace the hegemonic power upheld by processes of social, cultural, and economic exclusion.1
(p.4) As critical scholarship on disability has underscored (Kittay, ‘When Caring,’ Love's Labor; Kittay, Jennings, and Wasunna; Sedgwick; Carlson, ‘Cognitive Ableism’), there is a fundamental conceptual problem that needs to be addressed, whether in Spain or elsewhere—that of viewing disabled populations merely as a foil for an able-bodied majority. This majority tends to (and has the social power to) support a peculiar image of themselves as ‘normal,’ a view that is bolstered by what Kittay, Jennings, and Wasunna call ‘the myth of the independent, unembodied subject’ (445). Contrary to this view, they make clear—drawing on Marx's declaration that we are a ‘species being’—that dependency is in fact the basis for the human experience (see also the essays in Carlson and Kittay's co-edited 2010 volume titled Cognitive Disability and its Challenge to Moral Philosophy). We are all born as dependent beings, and we are also confronted throughout life with longer or shorter periods where we are ‘inevitably dependent’ (443). Speaking more generally, she asks the rhetorical question: ‘Who in any complex society is not dependent on others, for the production of our food, for our mobility, for a multitude of tasks that make it possible for each of us to function in our work and daily living?’ (‘When Caring’ 2001 570).
Importantly, Yo, también begins with a strong statement shunning marginalization and pushing for inclusivity. Intercalated amid the film's initial establishing shots are close-ups of Daniel delivering a formal lecture before an attentive audience, wherein he argues powerfully for the necessary inclusion of all minority groups in Spain's democratic society.
Es como el cuerpo humano. ¿Qué sería del cuerpo sin sus miembros? Sí, son frágiles. Porque aquellas sociedades que dividen y apartan a las minorías son sociedades mutiladas. No están unidas. Parece como si cada uno fueran islas desiertas. Eso es lo que no se pretende. Lo que quiere es todo lo contrario, es unir. Aquí no hay ni mujeres, ni negros ni homosexuales ni nada. Aquí todos somos personas. Por eso el trabajo nos ayuda a sentirnos parte de esta sociedad, porque lo somos, siempre lo hemos sido, y queremos tener voz en esta sociedad, que para eso se llama democrática. Muchas gracias.
[It is like the human body. What would happen to the body without its limbs? Yes, we are fragile. Because those societies that separate and cordon off minorities are mutilated societies. They are not united. It is as if each person were a desert island. This is not what we need. What we need, on the contrary, is to come together. Here there are neither women, nor blacks, nor homosexuals, nor anything else. Here we are (p.5) all people. It is for this reason that work helps us to feel a part of this society, because we are, we have always been, and we want to have a voice in this society, which is after all a democratic one. Thank you.]
The intercalated shots of Daniel are gradually repositioned as if to constitute a pan of approximately 90 degrees, starting from his left side, settling in front of his podium, and alternating throughout with shots of audience members listening intently. Tying the initial shots together, the upbeat song ‘I Don't Believe in Love,’ by the band The School, works together with the images to encourage the film's viewers to see the speech as moving and even inspirational. Daniel's closing words are received with applause, and a final punctuating close-up allows viewers to share momentarily in his satisfaction with his successful delivery. The topic of disability, here, is not explicit but instead implicit in the speech—it is embodied in Daniel's performance. Tellingly the word ‘disabled’ is not even uttered (at least in the section of his lecture presented on screen).2 This detail, which may seem to constitute a curious omission for many viewers, in fact reflects the wider arc of the film. Throughout, directors Pastor and Naharro have avoided, on the whole, the superficial presentations of disabled populations that routinely obtain in media products. In his book Disability & the Media (2005), Charles Riley, for example, has critiqued such superficial representations, pointing to the ubiquitous media formulas that emphasize either the ‘sadcrip’ or the ‘supercrip’ (see also Enns and Smit). In short, either a person is deemed sufficiently disabled so as to have earned the viewer's pity or, on the flipside, the person seems to have transcended his or her disability so as to have earned the viewer's respect. The clinical perspective of disability as a problem to be solved, as scholar Mark Rapley notes in his book The Social Construction of Intellectual Disability (2004), frequently appears in films and television programs. In Yo, también, however, this trend is wonderfully displaced by a social perspective: Daniel, his brother Santi, and the latter's wife Reyes all work in some position related to the public administration of disability programs and decidedly not in a medical or clinical context.
Although the film deals in part with the trope of normalcy (its tagline reads ‘¿Para qué quieres ser una persona normal?’ [Why do you want to be a normal person]), its emphasis is not on the proper assimilation of disabled people into a ‘normal’ society, but rather on the rights of this population to lead as rich and full a life as they desire, however that might play out. In this, the film holds true to the Convention on the Rights of Persons with Disabilities promulgated by the United Nations as recently as 2006 (opened for signature in 2007, entered into (p.6) force in 2008). In the prologue to a lengthy publication dedicated to the Convention, the president of the organization Down España writes:
De todos los derechos que la Convención Internacional de los Derechos de las Personas con Discapacidad—del año 2006—reconoce a las personas con discapacidad intelectual, quizá el más importante y al mismo tiempo el más inesperado (respecto de las que tienen discapacidad física, nadie lo pondría en duda) es el que hace mención de su ‘libertad de tomar las propias decisiones.’ Con autonomía personal, o sea, con independencia, con su escala de valores, con su propio criterio; acertado o equivocado, pero el suyo. Es el primero de los ocho principios en los que la Convención pretende fundamentar toda su labor y lo incardina nada menos que en la ‘la dignidad inherente’ a las personas. (9)
[Of all the rights secured for people with intellectual disability by the International Convention on the Rights of People with Disabilities—from the year 2006—perhaps the most important and at the same time the most unexpected (no one would doubt its relevance for people with physical disabilities) is that which specifies their ‘freedom to make their own decisions.’ Via personal autonomy, or rather, independence, their own prioritization of values, their own criteria; either right or wrong, but in any case their own. This is the first of the eight principles upon which the Convention seeks to ground all of its work and it is firmly rooted in (recognizing) ‘the inherent dignity’ of people.]
In Spain, as in other countries, this UN Convention represents a paradigm shift in the approach to disability in that it underscores the right for persons with disabilities to lead autonomous lives. As we saw in the Introduction to this book, specific articles of this UN Convention have been translated into a massive televised campaign to raise public awareness of the rights of disabled people (see also ‘Campaña’, ‘Campaña ’ and ‘Campaña ’).
A few words are perhaps in order regarding the history of disability legislation in Spain. Gloria Soto and Orit Hetzroni's article ‘Special Education/Integration in Spain’ (1993) provides the following abbreviated outline: although there was no institutionalized education for children with developmental disabilities prior to 1900, the first half of the twentieth century saw the establishment of segregated schools for the disabled, and by the 1960s there arose demands for educational rights on the part of parent associations and social services departments, demands that were unfortunately left unaddressed by (p.7) the Spanish government under the Franco dictatorship. The General Education Law of 1970 ‘formulated the special education concept’ (182), and the creation in 1975 of the Instituto Nacional para la Educación Especial (under the Ministerio de Educación y Ciencia) established educational curricula, coordinated educational services, and designated economic resources to that effect. The Spanish Constitution of 1978 made education a universal right regardless of a disabling condition, and the 1980s saw the creation of new public policies and laws, among them the important Ley de Integración de los Minusválidos (LISMI) of 1982, which was followed by subsequent positive steps forward.3
The film Yo, también does well in highlighting some of the most notable successes that have ultimately come out of this legislative and social struggle for equality, giving us frequent visual access to an innovative, if fictional in this case, day program for adults with disabilities. The center known as Danza Móbile, run by Santi and Reyes together, boasts a fully equipped dance studio and provides opportunities for both choreographed group dances and individual dance therapy. Still, we become aware of the relative lack of support for such programs when Daniel goes behind his agency's back to get Pedro a ‘visiting spot’ in a program that is otherwise at full capacity. This not only provides the young man with disabilities a place to go during the day, but also saves his mother from the costly burden of having to look after him herself while holding down employment. While the film's twenty-first-century representation of the opportunities available to people with developmental disabilities necessarily goes beyond what would have been feasible in the 1960s, and though Daniel (who is a university graduate) certainly is an exception to previous norms,4 Yo, también is far from presenting a self-congratulatory view of the state of Spanish integration. Integration, after all, may not be enough if it is accompanied by a perspective that denies true autonomy and independence to people who become systematically identified by their disability alone. Pastor and Naharro's film, as discussed below, clearly points out that there is more work to be done, particularly with regard to love and work.
Love in the Wake of a Clinical Perspective on Disability
As developed throughout Yo, también, the theme of love constitutes an attempt to go beyond a clinical view of disability, to bring Daniel and Laura together by emphasizing their shared, universal human desires, (p.8) and ultimately to advocate for the rights of its other disabled characters to lead the same fully realized if necessarily interdependent lives—lives that cognitively abled people are routinely permitted to lead with much greater autonomy. While the formal aspects of the film are perhaps purposely understated (and as a result somewhat conventional),5 they nevertheless serve to underscore this theme throughout. The recurring trope of a heart, for example, functions as a visual touchstone reminding us of the importance of love, in the process providing consistency across the film's various storylines: Daniel gives Laura heart-shaped earrings and, during their outing to the beach, applies sunscreen on her back in two arcs that likewise form a heart. Further, in the storyline concerning the budding relationship between Pedro and Luisa (two adults with developmental disabilities who meet at the film's highlighted day program at Danza Móbile), a key prop discovered by Luisa's mother shows a heart drawn around Pedro's name on a piece of paper, and Pedro later shows Daniel a heart he has had tattooed on his arm as a gesture of love for Luisa. Nonetheless, the very success of the film lies in its ability to use the theme of love to draw attention to the way in which the needs, desires, and the very autonomy of people with disabilities are habitually subjugated to a clinical view of disability. The consequences of this subjugation are such that the person with disabilities is either forced to break established rules to experience the togetherness they see all around them or to necessarily resign him-or herself to a life of loneliness.
This pair of limited options routinely presented to adults with disabilities is very clearly embodied in the increasing attention devoted by the film to the emerging relationship between Pedro and Luisa. This relationship develops in parallel to the one between Daniel and Laura—perhaps as a way of preventing the film's viewer from adopting a convenient stereotype that disabled populations approach love in a given way, and thus encouraging a richer and more personalized understanding of such experiences. When Pedro is given a spot in the Danza Móbile day program (through the efforts of Daniel and Santi's ability to operate outside institutional procedures to the benefit of people with disabilities and their families), his dancing ability quickly catches Luisa's attention. One day, Reyes returns to the studio room to clean up and finds the two of them making out on the floor. She explains to them that they cannot do such intimate things in a public place, pointing out that they do not see her and Santi doing such things in public.6 The lack of autonomy afforded the pair influences their access to space and thus their ability to secure time alone. When Luisa's mother, having found her (p.9) daughter's drawing of a heart around Pedro's name, complains to Santi and Reyes (in an infantilizing tone) that the problem is Luisa's inability to distinguish between a ‘dancing partner’ and a partner ‘in reality’ (‘distinguir entre pareja de baile con pareja en la realidad’), she feels forced to withdraw Luisa from the day program for as long as Pedro is attending. Pedro ultimately manages to find the bakery where Luisa works with her mother, and, reunited, the pair waste no time, stealing away with cash and a wedding cake for what becomes one of the most rollicking sequences of the film. Since they have no access to a space of their own, Luisa and Pedro pay for a carriage ride, eat cake, dance in a plaza with a homeless man who joins in the fun, and ultimately decide to check into a pensión (an inexpensive boarding house) with the hope of a more intimate encounter. The pair's escape predictably prompts desperation on the part of Luisa's mother, delight on the part of Luisa's dance class partners, general frustration for the administration of Danza Móbile—and it ultimately makes for a key piece of dialogue between Santi and Daniel reflecting on the lack of autonomy generally experienced by people with disabilities as regards feelings, love, and desire:
—Vamos a ver. Esto no es el fin del mundo. Sólo quieren estar juntos.
—Daniel. No han ido a la universidad, Daniel.
—Pero no hace falta estudiar para tener necesidad.
—Necesidad, ¿Tú sabes el morrón que tengo? Si tienen necesidad que se masturben.
—Pero eso no es todo. Es tener compañía, es tener afecto, es tener algo.
[—Let's see. This is not the end of the world. They only want to be together.
—Daniel. They haven't attended college, Daniel.
—But one doesn't have to have studied to have needs.
—Needs … do you know the trouble I'm in? If they have needs, let them masturbate.
—But that isn't everything. There is (the need to have) a companion, affection, something.]
Underlying Daniel's words is the fact that even in the twenty-first century, even after the UN Convention, the physical and emotional rights of people with disabilities to love and to express affection and desire are far from secured.
The film notably goes to great lengths to showcase the reality of such needs throughout,7 perhaps most dramatically when Daniel (p.10) becomes flustered by Laura's ongoing rejection of his advances during a work outing. Seemingly in response to her questioning if he has ever tried prostitution (a question which he initially answers by humorously asking her if she thinks women would pay him for his services—‘¿Tú crees que las mujeres me pagarían?’), Daniel takes a cab to a brothel where he is referred to as a child by the bouncer and turned away at the door despite his protests that he is 34 years old and holds two credit cards. While perhaps this may not be what is meant by Article 30 of the UN Convention securing ‘Participación en la vida cultural, las actividades recreativas, el esparcimiento y el deporte’ [Participation in cultural life, recreational activities, amusements and sport], it nevertheless points to the gap between the access to society afforded cognitively abled people and the limitations placed on the needs and desires of persons with disabilities.8 In treating Daniel as a child, the bouncer models a reaction to adults with disabilities that is all-too-common—and yet the film's directors have focused equally on Daniel's ability to make such misconceptions work for him, as seen in the way he initially seeks out Laura's affection. When they first meet, Laura tellingly mistakes Daniel for a client and not a co-worker, even though his arrival has been clearly announced and anticipated by all. He soon takes advantage of this to play the victim around her, hoping to receive more attention: and for this he is well rewarded. When Daniel asks Laura to direct him to a photocopier that is not broken, he allows her to think he has not understood her exaggeratedly deliberate instructions, forcing her to accompany him and allowing them to spend time together. Similarly, he often allows her to tie his shoes for him, even though he later finds himself trapped in this helpless role such that he is forced to scold her, saying that he has known how to tie his shoes since he was ten (‘Yo tengo treinta y cuatro años, y sé atarme los cordones desde los diez’ [I am thirty-four years old, and I have known how to tie my shoelaces since I was ten]).
Dueñas's Laura is well developed and functions as a welcome counterpoint to Pineda's Daniel. If Daniel exaggerates his dependence as a strategy toward securing affection from Laura, she does quite the opposite in her relations with men, keeping her guard up and avoiding meaningful connections (as she says near the end of the film, despite having ‘slept with’ many men, she has never ‘made love’). Rather than provide a ‘normal’ foil for the characters with disabilities who are marginalized in varying ways throughout the film, Laura importantly and even movingly demonstrates the challenges faced also by people without disabilities, the way that both (p.11) communities may be victimized and dependent on others, as well as their identical needs for love, affection, desire, and community. In Laura's case, this demonstration unfolds along two paths that are perhaps interconnected. On a day-to-day level, and as a concerted counterpoint to the self-sufficiency modeled by Daniel, Laura demonstrates that possessing her own autonomy may also entail being unable to hang a picture or being unable to cook anything other than a premade packet of food. At one point, she and Daniel collaborate in making a breakfast of real eggs in a pan, to humorous effect. On a deeper level, she is unable to confront her past head-on. With this in mind, the most moving parallel established between Daniel's and Laura's storylines entails their relationships with their respective parents. Daniel's mother tearfully explains to him her early struggle to accept his having Down syndrome, asking for his forgiveness which he lovingly grants with a hug. Laura's estranged father, just before dying, mistakes Laura's sister-in-law, Nuria, for his daughter and asks for forgiveness for an implied childhood molestation—information that is relayed to Laura via her sister-in-law and that both allows her some degree of closure and the promise of a new beginning. These and other parallels signal a shift away from the clinical approach to disability toward a paradigm in which access to meaningful human relationships is paramount for both disabled and nondisabled populations alike. Likewise, Laura's father's prolonged hospital stay provides an illustration of the point made by Kittay, Jennings, and Wasunna regarding the inevitable periods of dependency through which we all must pass (‘Dependency’).
The most poignant disruption of the clinical paradigm of disability occurs in Daniel's own explanation of his disability to Laura while at the beach. Laura's initial remark regarding the shape of Daniel's hands prompts a response clearly directed not only toward her character alone but also toward those in the film's general audience who remain relatively unfamiliar with Down syndrome.9
—Son gorditas [las manos], ¿no?
—Sí, bueno, ese es un rasgo del síndrome de Down, una característica.
Luego también tenemos más características, ¿sabes? Por ejemplo, el paladar, es más estrecho. Eso también afecta al habla, porque se nos puede, se nos traba la lengua, y nos cuesta mucho hablar.
[—They (your hands) are a little fat, aren't they?
—Yes, well, that is a trait of Down syndrome, a (typical) characteristic. We also have other characteristics, you know? For example, the palate (p.12) is more narrow. And that also affects our speech, because it can get our, it can leave us tongue-tied, and it takes a great effort to speak.]
Daniel's empowering opportunity to control his own self-representation in this case10 mirrors the film's emphasis on self-determination and autonomy. A key scene occurring later in the film illustrates how this sort of autonomy might be granted: Pedro and Luisa are sharing a table in the family bakery and even being served food by Luisa's mother, showing that the latter has taken steps toward affording her daughter greater autonomy in making decisions in the realm of love, even if the precise dimensions of the couple's relationship are left unclear.11 If people with developmental disabilities are to enjoy the autonomous life emphasized by both the organization Down España and the UN Convention,12 this must also apply to the realm of love. As the film makes clear through the voice of Daniel, another limitation placed on people with developmental disabilities, regardless of circumstances, is the need for couples to receive approval from their parents or guardians before they can be married, as is the case with Luisa and Pedro. Shortly after being hired, Daniel also remarks that the only thing left for him is to get married (‘Ya sólo falta casarme’ [I only need to get married]). Yet love, as the following section will address, is only one of the areas in which people with disabilities must be afforded equality. The film's significance lies also in the fact that it advocates for the full inclusion of disabled populations in the realm of work.
The Importance of Meaningful Work Opportunities
In order to understand the contribution of Yo, también to the struggle for equal employment rights, it is imperative to point to trends governing much recent work on employment and disability in general (Morris; McGuire and Chicoine; Moxley; Contardi; Parmenter, ‘Living’, ‘Quality of Life’; Pardeck; Chima; Wehman, ‘Supported Employment,’ ‘Integrated Employment’; Kiernan; Vilà et al.; Migliori et al.; Citron et al.), as well as studies on employment for people with developmental disabilities in particular (Abbott and McConkey; Hartnett et al.; Lack; Morris; Ping-Ying Li et al.). Such recent research has acknowledged the importance of meaningful work for people with disabilities, and with Down syndrome in particular, asserting that this population ‘can be adversely affected by the limited number of jobs available to them and by the lack of independence and control they have over their own lives’ (McGuire and Chicoine 227). The extent of the problem becomes (p.13) clear when one reads that people with developmental disabilities struggle with unemployment figures that are ‘horrific … (hovering at a steady 80 percent even before the last recession)’ (Riley 10). In Spain, an announcement by El Comité Español de Representantes de Personas con Discapacidad (CERMI) dated June 23, 2010 has proposed various reforms aiming to correct the ‘desigualdad que tienen las personas con discapacidad en el mercado de trabajo en relación a la población en general, con una menor tasa de empleo y una mayor tasa de desempleo’ [inequality faced by people with disabilities in the job market with regards to the general population, a lower rate of employment and a higher rate of unemployment].13 These reforms become even more important in light of one study's findings suggesting that ‘having employment enables people with intellectual disabilities to develop more positive self-concepts’ (Ping-Ying Li et al. 30). Abbott and McConkey argue that previously applied purely social models of integration for people with developmental disabilities have been insufficient at best.14 Simply put, achieving full social integration requires allowing persons with disabilities the opportunity to engage in meaningful work.
For these reasons, the UN Convention speaks in Article 27 of ‘el derecho de las personas con discapacidad a trabajar, en igualdad de condiciones con las demás’ [the right of people with disabilities to work, subject to the same conditions as others]. Putting Daniel's employment and working relationships at the center of this film is a clear call advocating for the inclusion of people with disabilities in the workforce—this much should be clear. He is welcomed by his co-workers as part of the team, invited to participate in work-related functions and parties both in and outside of the workday. Although not a documentary, part of the success of Yo, también lies in its heavy reliance on the handheld camera to simulate real-world and naturally occurring social interactions on the way to achieving a certain degree of social realism. The intent is clearly to give the audience a sense that people with disabilities should not be forcefully excluded from public work environments nor mandatorily segregated in separate work facilities. This is an important visual legacy of the film, given Spain's response to Article 27 of the UN Convention:
En 2009, el Gobierno de España aprobó por vez primera una cuota específica para personas con discapacidad intelectual en el acceso al empleo público proporcionado por la Administración General del Estado. Hasta ese momento, existía una cuota del 5% a favor de personas con discapacidad, sin distinción de tipo. Una vez aprobado el (p.14) cambio normativo, la cuota se elevó al 7%, dedicándose el 2% de incremento a personas con discapacidad intelectual, dada su peor situación en cuanto a empleabilidad e inclusión laboral, y la inferioridad de condiciones de igualdad si tienen que competir en los procesos selectivos con otras personas con discapacidad. (‘Derechos’)
[In 2009, the Spanish government approved for the first time a specific quota for people with intellectual disabilities in the access to public employment afforded by the General State Administration. Up until now, there was a 5% quota for people with disability, with no regard for type. Once the normative change was approved, the quota rose to 7%, dedicating an additional 2% for people with intellectual disabilities, given their disadvantaged situation regarding employability and inclusion in the workforce, and the unlikelihood of equal conditions if they must compete in selective processes with other people with disabilities.]
In light of this statistic, the film perhaps points to the Spanish hesitancy with regard to the implementation of this reform. Indeed, we are informed by Laura that Daniel's position is a temporary replacement for someone who has post-partum depression, and not a permanent position. Moreover, it is a bit difficult to avoid seeing Daniel as an exception of sorts. Along these lines, the film makes it clear in scene after scene that Daniel has had many advantages that have played no small role in his success: first and foremost loving and caring parents, a background of middle-class means (assuring the resources to push him on to high levels of education), a brother and father with whom he can easily stay active and engaged (going to basketball games and exercising in the pool), and so on. On a personal level, he is blessed with an enviable sense of humor (and timing), empathy, and patience. He also possesses a gift for language (he is working on English with his mother, and throws a few words into his conversations with Laura to impress her: ‘Your hair is beautiful,’ for example). All the same, these details may ultimately only suggest how much more work there is to be done in the area of work reform. The bottom line is that Daniel's work with the agency importantly provides him with the opportunity to form a positive self-concept just as it does for the cognitively abled employees there. In a sense, the film is content to show Daniel as meaningfully employed—and perhaps it should be. Meaningful work is one of the best ways to achieve a sense of autonomy by being involved in situations with decision-making potential and participating in a shared social world.
(p.15) In privileging Daniel's situation, however, the film perhaps leaves a more incisive criticism to be made and implemented more broadly. Before her ephemeral escape with Pedro, we see Luisa at work in her mother's bakery, minding the counter while her mother is in the back, presumably having been given the autonomy to use the register if necessary. Nonetheless, the film leaves unanswered more than one question related to her remuneration: What, if anything, is she paid? Does she control her own finances? Does she have access to her own accounts? Can she make her own purchases? We can, perhaps, attribute some of the imprecision of the film regarding this volley of questions relating to employment and work to the prominence of the melodramatic theme of love. So much of the action centers on Daniel's love for Laura and thus to the question, ‘What more-or-less normal girl would fall for Daniel?’ (formulated by his mother in these words, ‘¿Qué chica medianamente normal se interesaría por un chico como Daniel?’). While this manner of pitching the movie to a general audience is perhaps necessarily part and parcel of the need to package the film as a conventional love story, playing upon the predictable desire of some viewers to find out definitively whether Laura and Daniel will get together at the end or not (the movie resolves this issue leaving no room for doubt), it is Yo también's more fundamental preoccupation with the political project of equality for people with disabilities that holds all its disparate elements together.
That the film emphasizes the political project of providing work opportunities for people with developmental disabilities is far from surprising once one sees that one of the producers of Yo, también is none other than Julio Medem. Here, just as in the Medem-produced documentary ¿Qué tienes debajo del sombrero? (2006, dirs. Lola Barrera and Iñaki Peñafiel), the production company is listed as ‘Alicia Produce’—bearing the name of Barrera and Medem's daughter who is a person with Down syndrome. As chapter 4 of this book will discuss in detail, ¿Qué tienes debajo del sombrero? notably introduces us to American Judith Scott, who was both deaf and a person with Down syndrome, precisely through her identity as a working fiber artist. In both cases, the accomplishment is the creation of a multilayered film that, although touching on both disability and wider issues (in Yo, también, the universality of love; in ¿Qué tienes debajo del sombrero?, the enigmatic nature of artistic production), puts the working identity of individuals with developmental disability first and foremost.
It is clear that disability studies seen as a political project necessarily requires the exploration of a number of strategies for improving the lives and socio-economic conditions of people with developmental (p.16) disability. Whether in love or work, this means granting independence and autonomy to a population that has, for too long, been constrained by the yoke of what scholar Harlan Lane has termed, albeit in different yet nonetheless relevant circumstances, ‘The Mask of Benevolence.’ To truly gain an appreciation of the challenges faced by people with disabilities in our society, we have to push not only for integration and equality in love and work, but also to unmask the myth of cognitive ableism and recognize the universal dependence of humanity.
In this sense, the film's title conveys everything one might need to know about the film's position and content—the words ‘Yo, también’ function simultaneously as a call for inclusion and as a declaration of self-determination. The figure of Daniel allows the viewer with little or no experience of (developmental) disability to see the numerous ways in which limitations are placed on disabled populations both in love and at work. The film's implicit resonance with aspects of the UN Convention serves as a reminder of how much more we must do if we are to realize Daniel's articulation of a society that no longer divides and separates minorities.
Deciphering the Mixed Messages of León y Olvido (2004)
León y Olvido is in many ways the precursor of Yo, también. The film is about a pair of 21-year-old twins who have ‘sentimientos intensos y contradictorios’ [intense and contradictory feelings] toward one another (Hernáez Rioja and Martínez Ollé 67): Olvido is played by Marta Larralde (also from the 2004 film Mar adentro), and her brother León is played by Guillem Jiménez. As with Pineda's role in the 2009 film, Jiménez's 2004 role is also a first of sorts—Jiménez was the first person with Down syndrome to have graduated from secondary education in Spain, and he likewise enjoys the title of being the first to star as the protagonist of a Spanish film. Like Pastor and Naharro's later film, León y Olvido succeeds in numerous respects—like Yo, también it is a similarly substantial, nuanced and largely positive portrayal of a character with Down syndrome, it includes a number of secondary characters with Down syndrome who complement Jiménez's title role, and it is savvy enough to point beyond the character-driven narrative toward broader social issues associated with disability, aspects that are addressed in turn below. These successful aspects of the film (p.17) are of course—given the paucity of films highlighting the theme of disability at all in Spain15—merely icing on the cake, which is not to say that the way disability is portrayed in itself in the film is not important. As Carmen Pereira Domínguez makes clear in her essay from 2007, the cinema serves as a sort of public forum that allows for subsequent pedagogical intervention (she lists the film along with 13 others on the theme of disability)—the mere novelty of foregrounding a protagonist with Down syndrome allows for discussions regarding disability to take place among the wider viewing public and in the media, discussions that would be less likely to take place if the disabled character had a less prominent role. Nevertheless, its numerous positive aspects notwithstanding, Léon y Olvido ultimately stakes out a somewhat contradictory position, there being many problems with the film that stem from its somewhat heavy-handed plot. In the end the sensationalistic aspects of Olvido's story eclipse the film's portrayal of disability.
As the interested reader may consult the extensive discussions of the complex storyline of León y Olvido found in essays by Martín Ruano et al. and Hernáez Rioja and Martínez Ollé, here I will strive only for the most concise of synopses. After their parents die in a car accident—and after León is kicked out of a number of educational centers/group homes—Olvido reluctantly finds herself in the position of having to be his legal guardian. At the time, Olvido is in a relationship with a doctor named Iván that eventually ends when he decides to go to Africa with a non-governmental organization, and she similarly faces disappointment in work when she is asked to leave her unstable job at a factory. For the duration of the movie, the two siblings seem to be trapped in a relationship riddled with incestuous tones. Juan Fragueiro writes of ‘algunos innecesarios momentos de tensión sexual’ [several unnecessary moments of sexual tension] (18) between the twins that become most overt in sensual bedtime rituals (in the ritual, he ‘boards’ her shouting ‘al abordaje’ [all aboard] as if she were a ship and he the captain) and the act of bathing together and sleeping in the same bed.16 It may be true that siblings of people with disabilities often have a conflicted relationship with their brother or sister—experiencing a range of contradictory emotions that include love, jealousy, and guilt, as well as frustration at the dependence and greater needs of the sibling with developmental disability. My view, however, is that the film balks at a realistic treatment of such a complex emotional bond, ultimately tending to reproduce the serialized over-dramaticism of a thriller with a central femme fatale.
Se inicia la película proponiéndole a León que coja una flor cerca de un precipicio y a lo largo del film va incrementándose la agresividad. En una ocasión le deja abandonado en el campo, y la guardia civil le recoge. La asistenta social le recrimina su acción y ella se muestra impotente. En otra oportunidad intenta huir de casa con una maleta para dejarlo solo pero León la descubre a tiempo. Otro día intenta envenenarle y León tiene que ser ingresado de urgencias en un hospital. También incita a un perro que encuentran por la calle a que le muerda. Finalmente le dispara con una pistola que resulta ser de fogueo. (Hernáez Rioja and Martínez Ollé 68)
[The film begins with Olvido asking León to pick a flower close to the edge of a cliff and throughout the film her aggression steadily increases. On one occasion she abandons him in the countryside, and the Civil Guard picks him up. When she is reproached for this by a social worker, she seems unconcerned. At another point she packs a suitcase and tries to leave home in order to get away from León, but he discovers her plan in time. On another occasion she tries to poison him and León has to be admitted into emergency hospital care. She also incites a dog they find in the street to bite him. Finally, she shoots at him with a pistol that turns out to be loaded with blanks].
Quite frankly—and even leaving out a subplot that toys with Olvido becoming a prostitute after having been fired from a wedding shop job by her employer's wife—one half of León y Olvido's storyline is overtly sensationalist. Perhaps this is a response by the director to the apparently widespread opinion—one I do not hasten to embrace—that films focused on disability have tended to yield less intriguing plots (such an opinion is suggested by Martín Ruano et al. as a possible motivation for the film's complicated story). Many more subtle aspects of the plot are similarly somewhat incredible. For example, although Hernáez Rioja and Martínez Ollé make much of Olvido's struggle to have León be independent—‘en los desplazamientos, en vestirse, en el orden de la casa, en la cocina’ [in getting around, in getting dressed, in cleaning the house, in the kitchen] (68)—some viewers more familiar with the full range of behavioral problems that sometimes characterize disabled populations may find it unconvincing that León's character, who is in many other ways seemingly a fully autonomous and even mature 21-year-old man, is presumed to be unable or even unwilling to help (p.19) his sister. The problem in this instance is not in Jiménez's acting, but rather in the script itself. Although it may aim to portray León as initially incapable of independence, in reality his worst problem regarding autonomy seems to be that on one occasion he is wearing a red sock on one foot and a yellow one on the other (12:30, ‘y siempre vas a ir como tú te vistas’ [and you're always going to wear whatever you put on]).17
It should not be ignored that the film's director, Xavier Bermúdez, grew up around people with Down syndrome—‘El director ha tenido desde niño relación cercana con personas que padecen el síndrome Down’ [Since his childhood, the director has had close relationships with people who have Down syndrome] (Hernáez Rioja and Martínez Ollé 67)—a fact that may explain its otherwise nuanced and largely positive treatment of disabled characters. Given the large audiences that may potentially be reached by cinematic texts over other cultural products, the pedagogical/educational effect of the film should not be undervalued. As actor Jiménez explains: ‘Así la gente puede conocer mejor cómo somos las personas con síndrome de Down, porque no somos enfermos ni mongólicos. Yo soy catalán no de Mongolia’ [In this way people can better understand what people with Down syndrome are like, because we are neither sick nor Mongolian. I am Catalan, I'm not from Mongolia] (qtd. in Fragueiro 18; note that the original Spanish plays implicitly with ‘mongoloide’ [Spanish]/‘mongoloid’ [English], an objectionable term historically used to refer to people with Down syndrome). Since films are potentially not merely representations of people with disabilities but also themselves employment opportunities for disabled populations, León y Olvido was a chance to combat widespread misunderstanding of Down syndrome on both sides of the camera. As noted by critic Juan Fragueiro, also the father of a child with Down syndrome:
La popular creencia—por otro lado bastante desacertada—acerca de la conducta de las personas con síndrome de Down (que son bravos, que son inconstantes, que hablan mal, que tienen un aprendizaje lento, etc.) no los beneficia a la hora de los malditos castings televisivos, cinematográficos, para spots de breves minutos o cualesquier escena pixelada. (17)
[Popular beliefs—which are also quite erroneous—about the behavior of people with Down syndrome (that they are uncivilized, that they are fickle, that they talk poorly, that they learn slowly, etc.) do them no favors when it concerns those confounded casting calls for television (p.20) and film roles, for spots lasting only a few minutes or any recorded appearance whatsoever].
Disregarding, for a moment, the aforementioned excesses of its storyline, León y Olvido is remarkably successful as a film that portrays its numerous characters with disabilities in a largely positive light. The following sections address, in turn, both the positive portrayal of disability in the film and also the way that Olvido's story ultimately, for this viewer, trumps many of its potential successes through an emphasis on Olvido's (over-) dramatic and eccentric behaviors.
The Successful Presentation of Down Syndrome
León y Olvido's first success is, of course, the fact that Guillem Jiménez occupies center stage—even though the film's long list of prizes were awarded instead for Bermúdez's direction and for Marta Larralde's acting (see Hernáez Rioja and Martínez Ollé 67–68). But its treatment of other secondary disabled characters, and its inclusion of numerous secondary roles played by actors with disabilities, also deserves special mention. The film opens with a shot of León in his room as a male and female voice call his name from outside in the hallway, asking him to open the door. He is alone in an unlit room, bathed in shadows and, facing the window, backlit to further emphasize that he is cloaked in feelings of loneliness. He does not answer for over a full minute (0:54–1:51); he continues to be shrouded in shadow later when at home with his sister (e.g. 21:46–22:00). He moves only to pick up a photograph of his sister that has been torn in half. As he arranges the two halves together, a semi-subjective shot bordering on a point-of-view (where we see his hands obliquely—but not from his own perspective) allows the form and content to collaborate on delivering a snapshot of a fundamental duality that vertebrates the movie. There is a play of presence/absence at work here—León is, throughout, simultaneously both with his twin sister and also alone. The implication is that even in the company of others he is marginalized. The presentation of the character of León is thus nuanced in that he conveys both the pain of being alone that may be experienced by people with disabilities who have yet to find supportive social structures and also their potential for achieving self-sufficiency and independent living (even if this is not achieved in the film's plot). As opposed to a one-dimensional image of people with disabilities as either being incapable of anything or on the other hand as champions who seem to not let anything get (p.21) them down, here we have a humanized portrayal of León as a multi-dimensional person in his own right who faces, as we all do, both successes and failures.
But the film also succeeds in its presentation of other characters with disabilities. For example, a substantial, almost two-minute long (14:45–16:40), scene depicts León in his new classroom of peer-students, all of whom are adults with Down syndrome. It should be stated that the importance of Disability Studies approaches for education continues to be articulated as the shift from a medical to a social model of disability continues to unfold. Even in their 2011 book, Rethinking Disability, authors Jan W. Valle and David J. Connor note that:
Disability Studies (DS) provides a counterbalance to the deficit-based understanding of disability that permeates education […] how we educate students with disabilities has everything to do with how we understand disability. Without wishing to oversimplify, we might think of the medical model as primarily concerned with identifying and changing the student who does not fit the school context (i.e., based upon a perception that a child is intrinsically disabled), whereas the social model focuses on adapting the school context to fit the student (i.e., based upon the perception that the environment can disable a child). (xi, original emphasis)
As if living up to this ideal of an education driven by the social model of disability, in this first classroom scene18 the students' teacher, Raquel, does not engage in drawing attention to the students' inadequacies nor in correcting their errors, but rather in an activity that allows each student to speak for themselves and outline individualized goals for his or her future. Raquel asks the students what they want to accomplish in their lives. León is the second-to-last to speak before the end of the classroom scene, saying that he would like to take care of his sister: ‘Tengo que cuidar a mi hermana […] Somos iguales. Le prometí a mi madre que iba a cuidarla cuando ella muriese, y ella ya se murió’ [I have to take care of my sister (…) We are the same age. I promised my mother I would take care of her when she died, and she is already dead]. When Raquel presses, him, noting that his answer is a good one but asking if there is anything he wants to accomplish for himself, he responds that he doesn't know (16:32). Perhaps due to a historical lack of social expectations for people with disabilities, León has not yet learned to ‘dream big.’ But the real value of this scene is the variety of answers given by the other students in the class: Estrella says, ‘me gustaría tener un novio, que está trabajando, y me gustaría (p.22) tener hijos’ [I'd like to have a boyfriend, who has a job, and I'd like to have children]; José answers, ‘Tener una novia, tener unos hijos, casarme y… ir a fútbol, y tener vacaciones’ [To have a girlfriend, to have some children, to get married and … play soccer and go on vacation]; and Mónica responds, ‘Pues me gustaría tener novio, casarme, irme de vacaciones y tener mucho dinero’ [Well, I'd like to have a boyfriend, get married, go on vacations and earn a lot of money].
In a way this sequence goes far beyond the mere portrayal of a disabled character to match even Yo, también's presentation of a disabled population. The implicit message here is one expressed by Andrea Lack in her essay in the edited collection Down Syndrome: Visions for the 21st Century, which is that people with Down syndrome are now in a position to chart out their own paths: ‘After decades of few to no expectations of the abilities of people with Down syndrome and systematic repression of any vision they or their parents may have had for them, they deserve opportunities to develop, grow, and achieve in all aspects of their lives’ (441). The section of that pathbreaking edited collection titled ‘Part II: Self Advocacy’—featuring essays on ‘Having a Life’ (Illarramendi et al.), ‘Follow your Dreams’ (Burke) and ‘Life After High School’ (O'Neill)—similarly renders the visual success of this cinematic scene intercalated in León y Olvido in words. Therein, Jeffrey Mattson expresses a similar desire to get married (110), Mia Peterson is proud to be ‘the first self-advocate who has Down syndrome to be working for the Down Syndrome Association of Greater Cincinnati’ (110), and Chris Burke—formerly ‘Corky,’ the star of the US television show ‘Life Goes On’—advises readers, ‘So, don't let anyone stand in your way and who knows, you might wind up doing what you set your mind to’ (113). Likewise, Josh O'Neill writes of the value of learning to live independently (115), something that the disabled characters in Bermúdez's film seem to already value. Most importantly, as this scene of León y Olvido shows, these adult students have the ability and the confidence to speak for themselves. As Paul Williams and Bonnie Shoultz write in We Can Speak For Ourselves, a book on the origins and development of selfadvocacy by people with intellectual disability (from 1960s Sweden to the US and Britain), this is an important step in securing greater social rights.
There may be a gap, in this case, between speaking for oneself and learning to live independently—as León y Olvido is aware. This struggle is dramatized best in the subplot involving Jonathan, a classmate of León's whose respect for all things organized sets him apart from the other students. For instance, in the aforementioned classroom scene (p.23) some of the students begin to argue about whose turn it is to talk (Mónica is humorously persistent in drawing attention back to herself throughout the sequence), and Jonathan stands up to recite what he has presumably learned from Raquel: ‘Hay que respetar los turnos y si no podemos hablar al mismo tiempo, elegimos representantes’ [We must respectfully take turns and if we cannot speak at the same time, we will elect representatives] (15:07–15:15). The privileging of Jonathan's storyline is an important aspect of the film—and not merely because it succeeds in giving a broader picture of multiple life–experiences of disability, refusing to implicitly support the stereotypes that can often develop from having knowledge of only one person with disability. Jonathan, who is portrayed as a model student and the paragon of successful living, is seen acting as a kind of mentor to León, as when—in a long-shot—we see him from afar conversing with León after school, and giving him a friendly slap on the neck before going home. Later on, Jonathan invites León to room with him and a few others his age as a step on the path toward a higher degree of independent living (‘y esta puede ser tu habitación’ [and this can be your room] 50:11), and even encourages him to go on for further study (‘pues tienes que esforzarte y estudiar más’ [well then, you need to apply yourself and study more]). The directorial decision to allow Jonathan to take center stage is an effective way of showing the potential for León—and by extension many more adults with developmental disabilities—to live independently and to realize a self-autonomy that disabled populations have historically seldom been encouraged to achieve. This makes the way in which his subplot ends all the more disappointing. At 1:19:30, after being informed while in class with Raquel that Jonathan has been hit by a car, León visits him in the hospital. Jonathan says he felt worse the day before, to which León replies ‘Me parece que vas a morir’ [It seems like you are going to die] (1:20:20). After Jonathan says he is only feeling a little bad, León becomes more forceful and intentional with his words: ‘Creo que vas a morir’ [I believe you are going to die]. Jonathan then insists that the doctor has told him he will recover soon, to which León objects that doctors will say that sort of thing to patients, but this doesn't explain why his mother is so sad. Strangely enough, León turns out to be right, and a subsequent scene captures his classmates attending Jonathan's funeral (1:27:00-1:27:33). It is not clear whether this is intended to be a cautionary tale about disabled populations being careful crossing the street (in their hospital conversation, León reprimands Jonathan for not being careful enough), or whether the point was to illustrate León's social intelligence (having noted that people's behavior and the circumstances of (p.24) Jonathan's hospitalization didn't match the information given by the doctors). Either way, it is a bit over-dramatic.
Whatever Jonathan's fate, part of the success of the film is that we are witness to the steps León takes toward independent living. For example, as in Yo también, here, too, we have a cooking scene. León is shot in profile at the stove wearing an apron as he breaks eggs into a saucepan in a single long take (35:32–36:23). Although he has resisted cooking for his sister or himself (preferring that others do the work for him), all indications seem to be that he has cooked before, and successfully at that (although in another scene he uncharacteristically drops a fish on the floor, 1:15:45). After initially complaining that he needs to be accompanied to and from school by his sister, he quickly adapts one day (perhaps too quickly to be believable) when she doesn't show up. After being shown on screen taking a deep breath, accepting his fate (with a mature, responsible demeanor that the film contradictorily indicates he does not yet possess), he decides to walk home from school by himself (28:30). Demonstrating his maturity and selfsufficiency, he even spends the remaining (unspecified) daylight hours wandering around town and gazing into a wedding shop. Many hours go by unnoticed—and, moreover, uneventfully—and it seems not to have been a problem at all (30:30). Eventually (after an abrupt cut that shifts us from daylight to the dark skies of night) León returns home happy and energetically seeking dinner. Later in the film we see him with the rest of his class gaining practical work experience in carpentry, as if to prepare them all for a type of workshop employment previously considered to be one of the only options for disabled populations (1:18:30–1:19:00).
Ultimately, however, even despite its many disabled sub-characters, there is something a little bit off in León y Olvido's presentation of disability. We may be dealing with people with Down syndrome who have Exceptional Language Development (Rondal)—as is the case with Daniel in Yo, también—but there is no basis for comparison given that it lacks a presentation of less verbal characters (in contrast to Yo, también). Prior to what was previously believed, Jean A. Rondal suggested in 1995 that ‘phonology and grammar may be acquired and function relatively independently from other processes’ (1), and thus that many more people with Down syndrome might be able to improve their verbal abilities. Yet what León y Olvido fails to explain—and what Yo, también shows so well through Daniel's self-descriptions—is how it is that we have come to see a group of adults with Down syndrome who seem to be able to communicate with so little difficulty. Whether intentional or not, Bermúdez has created a film in which disabled (p.25) characters either act out in group homes (as does León prior to the film's narrative action, having been kicked out of four institutions in two years, 48:00) or function as relatively autonomous adults who experience no frustration, with little or no attention paid to the gap between these two extremes. It is not that this is in itself a bad thing, rather it is merely one more indication that the storyline of Olvido might have received more of the director's attention.
León vs. Olvido: Competing Storylines
Returning to the opening scene of the film helps us to understand that León y Olvido is caught by the desire to tell two stories that are poorly integrated with one another. The first is the compelling story of León, his struggles with group living and his learning to cope with the lack of a family or even any support structure. The second story is an overdramatized if not sensationalized story about Olvido, which at times takes on the tenor of a hackneyed ‘femme fatale’ Hollywood-esque tale. Although the first shots of the film—of León in a dark room, alone—undoubtedly strive to frame León as the co-protagonist of greater interest, the abrupt shift from the torn photographic image of Olvido to the graphic match of her passionless face driving a car (1:51) also belies a shift in the film's emphasis. This is also a film, as we are instructed visually in these early scenes, about a young woman struggling to integrate and fully realize herself and her own personality. Just as with the photograph of her in León's possession, she seems to be a woman split in two. As she continues to drive, shadows ominously fall across her face (1:56) just before a cut to an exterior pan of the car's movement (1:57–2:00), pointing somewhat predictably to a darker side that we will see play itself out on screen. It is of course intentional that León is to be the victim of her dark side, perhaps as an instruction from the director that populations with Down syndrome must be trusted only to willing and capable caretakers. Although ultimately the question of whether León y Olvido is successful at integrating these two stories may be up to the viewer, I suggest that the fact that Marta Larralde won awards for her performance19—and that Guillem Jiménez did not—may be a clue as to which storyline has been emphasized by the director perhaps even despite his own intentions.
The use of the set of the wedding shop—at which León stops on his way home from school one day—illustrates how Olvido's narrative comes to eclipse that of León in the film. When he first passes the shop (28:50), this initially reminds us of the discussion by his peers (p.26) saying they want to get married, thus advancing the social narrative of disability. The wedding dresses at first seem to symbolize the possible futures of his classmates, if not León—pointing in this way to generalized notions of self-advocacy and autonomy and perhaps even the notion of matrimonial rights (as voiced by Yo, también's Daniel). When León watches as an attractive shop assistant squats down to fix the bridal mannequin's dress, the established theme of weddings blends with that of desire and the question of sexual relationships for disabled populations (a topic addressed, perhaps, more directly in Yo, también). But this same wedding shop is soon folded into Olvido's competing and sensationalistic storyline, as she takes a job there and is eventually asked to become a prostitute by the owner's wife.
Another way in which Olvido's story eclipses that of León lies in the film's overarching theme of danger and death. Critic Antía María López Gómez perhaps rightly sees the film as being concerned not necessarily with disability, but rather with death: ‘El referente del relato no es, sin embargo, su discapacidad, sino la imparable, inacotable e inagotable pulsión de muerte que atraviesa todo el filme, y que instala todas las relaciones humanas, todos los actos, todos los propósitos, en el sinsentido abocándolos al fracaso’ [The referent of the story is not, however, his disability, but rather the unstoppable, unbounded and unavoidable pull of death that runs through the entire film, and that imbues all of its human relationships, all of its acts, all of its aims with a sense of chaos, leading them all to ruin] (López Gómez 22). This idea is introduced early on in the film. After Olvido picks León up from the group home, the pair stop to sit on a grassy cliff overlooking the sea (6:20) and the games with death begin. She asks him to pick her a flower far down on the rocky part of the cliff, and as the point-of-view shots establish—he looks at the flower, she sees him look at the flower, we see an idea occur to her—she sees the possibility of being rid of León for ever. As he slips and falls on the cliff—crying out to her for help—she seems to regret her trick and helps him up. But she continues to flirt with danger, death, and destruction throughout the film—through trying to have a dog bite León, poisoning him, and even firing a pistol at him that she believes is loaded (although it is loaded only with blanks). Her emotional distance throughout the film is displayed through her routinely cold, silent, and impassive stare; an affect that she perfects not merely when interacting with León but also with the other adults around her (the Civil Guard, the staff at León's group home, and even her boyfriend Iván) and even when she is alone (driving in the car, curled up in a fetal position on the couch, and so on). Whereas some of the games she plays with León—such as hesitating before picking (p.27) him up after school (for a full minute on screen from 19:58–21:00)—perhaps demonstrate that she is merely reluctant to fully commit to being his guardian or even that she may be considering forcing León to mature (and thus to walk himself home), these other more drastic events by their nature and their frequency portray her as herself in need of psycho-social help. As I argued above in the case of Yo, también, the contrast between Daniel's autonomy and Laura's dependence made for an interesting counterpoint, linking both disabled and cognitively abled populations in a shared social world in which we all need some kind of help. Here, however, Olvido seems to be in need of medication for depression, if not an antipsychotic, to control her dangerous impulses. It is unclear whether this specific aspect of the contrast is intentional on Bermúdez's part—and thus the problem.
The theme of death comes up once more, obtrusively, in a drawnout joke told by Olvido in a candle-lit room of the rental for which they can no longer afford to pay the bills. The fact that in the previous scene she has tried to pack her bags and escape from León for good (though he spotted her and thereby ‘foiled’ her plan) makes this joke all the more pertinent—it is an attempt to communicate obliquely with León regarding her (perhaps) unconscious desire to kill him. When the scene opens, Olvido is explaining to León that he has not understood the joke that she will now retell for the camera (‘No lo has entendido, es imposible que lo entiendas’ [You haven't understood it, it is impossible for you to understand it], 104:58). The joke is as follows:
Unos bandidos tienen preso a un hombre. El hombre está encerrado en la habitación de al lado. El no los puede oír. Y deciden que lo van a matar. Echan las sueltas para ver quién lo mata y le toca a uno. Este coge la pistola, la guarda en la ropa y va a buscar al preso. ‘Vamos a dar una vuelta por el campo … que hace mucho que no sales.’ Salen. Es de noche. El preso está asustado. ‘¿Adónde vamos?,’ dice. ‘A dar una vuelta.’ Caminan entre los árboles. Todo está muy oscuro. Y vuelve a decir el preso ‘¿Adónde vamos?’ ‘Tranquilo, no te preocupes, sólo a dar una vuelta.’ Los lobos se aullan. Y se eschuchan ruidos raros. Los dos hombres asustan y se abrazan. ‘¡Tengo mucho miedo! ¡Tengo mucho miedo!,’ dice el preso. Y le dice el bandido, ‘Pues anda que yo que después tengo que volver sólo.’ (1:05:30–1:06:53)
[Some bandits have taken a man prisoner. The man is locked up in the next room. He cannot hear them. And they decide that they are going to kill him. They draw lots to see who will kill the man and one of them loses. He grabs the pistol, lodges it in his clothing and goes to get (p.28) the prisoner. ‘Let's go take a walk outside … it's been a while since you went out.’ They leave. It is night. The prisoner is scared. ‘Where are we going?,’ he asks. ‘For a walk.’ They walk through the trees. Everything is dark. And again the prisoner asks, ‘Where are we going?’ ‘Relax, don't worry about it, we're only taking a walk.’ The wolves howl. And they hear strange noises. The two men become afraid and they huddle together. ‘I'm really scared! I'm really scared!’ says the prisoner. And the bandit says to him, ‘You think you're scared?! I have to make the trip back alone!’]
Clearly the intercalated joke is meant to function as a commentary on the narrative action of the film. León is the prisoner sentenced to death, and Olvido is the one who must kill him, even though he may be unaware of his fate. This connection between the joke and the storyline of the twins' relationship is made concrete when, after Olvido has told the joke, León pretends to understand it by repeating—tellingly—the words spoken by the prisoner and not the punchline delivered by the bandit (‘¡Tengo mucho miedo! ¡Tengo mucho miedo!’ [I'm really scared! I'm really scared!]).
Olvido has been trying to rid herself of León, and it is only after telling this joke that her attempts become more drastic. Immediately afterward she gives him a glass of poisoned juice, tempting him with promises of a bedtime pirate-ship boarding game if he drinks it all. The next scene is of an ambulance arriving at the hospital—and ultimately León recovers from this murder attempt quite quickly, as he is soon back home in bed with Olvido (1:11:08–1:12:17). From this point on, the narrative action centered on Olvido becomes less and less believable. She gets a job at the same wedding shop first spotted by León—with no explanation given. At the very moment she sets foot in the shop for the first time, a man implausibly walks in brandishing a knife and attempts to rob the store (the storekeeper gets a gun and sends the attempted robber packing, 1:13:45).20 Olvido later puts a gun in her own mouth and thinks about pulling the trigger (1:31:20) before finally—in the penultimate scene of the movie—shooting at her brother (with blanks) while on a ‘last-supper’ style picnic (beginning at 1:37:38). Even in this scene, León jokingly exclaims once more ‘¡Tengo mucho miedo! ¡Tengo mucho miedo!’ [I'm really scared! I'm really scared!], recalling the earlier joke told by Olvido and reaffirming his role as victim. The last shots of the movie capture the pair at home in the shadows, with León making light of their pistol encounter and Olvido lying down, morose, on the couch. Ultimately the acting of the film—and particularly the acting by those actors with Down (p.29) syndrome–is successful, unique, and compelling. But here it is the storyline itself that does them no favors.
This chapter has focused on the fictional and filmic representation of two protagonists with Down syndrome. Upon first glance, both films deserve praise for being strong exceptions to the international trend of giving only minor roles to disabled actors. As the scholarship on disability in film shows, many times an able-boded actor is given the role of a disabled protagonist—a practice that warrants our disapproval. Yet to label both Yo también and León y Olvido a success merely for having people with disabilities acting as their protagonists is not enough. We must go further and consider the film on its own terms, as a work of art understood in the context of social expectations. Here, the central issue of each film is the same. Both suggest the importance of sustaining a social dialogue on the topic of the autonomy of people with disabilities. Nevertheless, while Yo también's presentation of its protagonist Daniel is a nuanced look at what are clearly universal human needs—most of all the need to love and be loved and the need for meaningful work—León y Olvido falls into many traps that have traditionally plagued the filmic representation of disabled people. The latter film's emphasis on a femme-fatale storyline ultimately allows Olvido's character to overshadow our closer consideration of León's social circumstances. All things considered, the film's message seems to be that León deserves a better family, but not necessarily that people with Down syndrome can and should be allowed the same level of autonomy routinely taken for granted by populations without disabilities. The casting of a number of minor characters who also have Down syndrome adds a certain richness to the film, but even then, the death of Jonathan's character (together with Olvido's flirtation with killing her brother León) distracts from the issue of allowing people with Down syndrome to dictate their own lives.
(1) See, for example, Davis's Enforcing Normalcy (1995), McRuer's Crip Theory (2006), Sedgwick's Touching Feeling (2002), and Carlson's article in Hypatia (2001).
(2) This speech is complemented by a moment further on in the film in which (p.30) Daniel's mother watches a black-and-white video of his graduation, including a speech presumably delivered on that occasion. As Daniel is noticeably younger in these images, it is tempting to conclude that these are the actual images of actor Pineda's own graduation.
(3) Among these further steps, Soto and Hetzroni cite the 1986 creation of the Centro Nacional de Recursos para la Educación Especial and the 1990 passage of the Ley Orgánica de Ordenación General del Sistema Educativo (LOGSE). In the 1980s, integration was approached more openly than ever before, with Ministerio de Educación y Ciencia Álvaro Marchesi's statement that ‘The major goal of the integration principle is to facilitate the maximum social, intellectual, and psychological development of children with disabilities through social contact and interaction with their peers’ (paraphrased in Soto and Hetzroni 185). Marchesi is mentioned in passing also in a slightly different context still pertinent to disability legislation in my Deaf History and Culture in Spain (206–07, 208, 260 n.11).
(4) In the film, Laura asks Daniel to explain his success:
—¿Por qué eres así? ¿Por qué eres más listo?
—En mi caso es porque mi madre me hablaba mucho desde pequeño. Nos poníamos a hablar, de historia, de política, me preguntaba muchas cosas y yo, pues, le respondía y como mi madre veía que yo entendía lo que estaban diciendo, pues decidió que fuera a colegio, no veas, la que armó para que fuera a colegio, madre mía.
—Yo pensaba que era mosaico o leve.
—No, no, para nada, yo soy síndrome de Down de los pies a la cabeza, no … entero, entero.
[—Why are you like this? Why are you more capable?
—In my case it is because my mother talked to me a lot since I was little. We would chat about history, politics, she would ask me many things and I, well, I would respond to her, and as my mother saw that I could understand what was being said, well she decided that I would go to high school, don't you see? The one who pushed me to go to school was my mom.
—I thought that you were mosaic or mild.
—No, no, not at all, I am Down Syndrome from head to toe, no … all of me, 100%.]
(5) For example, as Laura prepares to drive Daniel to the beach, her image is split between two mirrors, highlighting her fragmented self-image as well as pointing toward her two possible futures, one in which she pursues some kind of relationship with Daniel and one in which she does not.
(6) Reyes cautions the couple in this way: ‘A ver chicos, a mí me parece muy bien que tengáis vida privada. Que os beséis, que os toquéis y que hagáis lo que queráis. Incluso que tengáis secretos para vuestros padres. Pero para hacer eso hay que buscar intimidad … Hay que buscar un sitio privado, y la escuela no es un sitio privado. Aquí se viene a bailar … Por la mañana os podéis dar un besito pero la lengua en su sitio, ¿Eh? ¿Vosotros me veis con Santi revolcada por el suelo dándome besos?’ [Listen up, kids, I think it's great that you have a private life. That you kiss each other, that you touch each other, and that you do what you like to. Even that you keep secrets from your parents. But to do all that you must seek out privacy … You have to find a private place, and school is not a private place. We come here to dance … In the morning (p.31) you can give each other a kiss, but keep your tongues in check, okay? Do you see me with Santi rolling on the floor exchanging kisses?]
(7) A brief scene near the beginning of the film shows Daniel accessing explicit video he has stored on his computer, and he later has a sexual dream regarding his female co-workers, Rocío, Estrella, and Macarena, that causes him to break into laughter at work. During office sequences, POV shots emphasize Daniel's developing desire for Laura. Later, in a conversation that Luisa milks for its humorous potential, Daniel attempts to instruct Luisa and Pedro in the proper use of a condom. The hit song performed by the group La Casa Azul (finalists in the Spanish Eurovision Song Contest), ‘La revolución sexual,’ also figures prominently in the film, highlighting this theme.
(8) As discussed in ‘Derechos humanos y discapacidad,’ violations of Article 30 occur when ‘Las personas con discapacidad se sienten discriminadas cuando intentan acceder a discotecas y salas de fiesta’ [People with disabilities feel discriminated against when they attempt to gain access to discotecs and party venues] (43).
(9) The name for Down syndrome comes from papers written by John Langdon Down during the 1860s.
(10) This sort of self-representation is increasingly a way to wrest discursive control on disability from the colonizing tendency of ‘official’ perspectives, as seen in the decision to encourage the participation of persons with disabilities as part of the publication ‘Convention Internacional de Naciones Unidas sobre los Derechos de las Personas con Discapacidad vista por sus protagonistas’ [The International United Nations Convention on the Rights of People with Disabilities as Seen by its Protagonists] (see Otón Hernández).
(11) First Luisa and then Pedro boisterously shout ‘Esa es mi madre’ [That's my mom], intimating that there has at least been some reconciliation and acknowledgment that Luisa is not ‘confusing a dancing partner with a partner in real life.’ Through a conversation between Reyes and Luisa's mother, the film implies that Luisa is particularly unable to make many of her own decisions given that she is only 24. As regards disability and reproduction more generally speaking, the 2009 Spanish report on ‘Derechos humanos y discapacidad’ [Human Rights and Disability] points out discriminatory language in ‘La Ley [Law] Orgánica 2/1010 (3 de marzo)’ on reproductive health and voluntary termination of pregnancy that grants an extended time period for decision making when the fetus may have a disability (19). Similarly, ‘Los progenitores con discapacidad son juzgados públicamente, no solo por la administración de justicia, también por los servicios sociales e incluso por la sociedad en general, como personas que no tienen el mismo derecho a ser padres o madres porque se las prejuzga como no válidos (o menos válidos) para hacerlo. Es preciso combatir estos prejuicios y prevenir las vulneraciones de este derecho, evidenciando y respetando que las personas con discapacidad, si cuentan con los apoyos necesarios, pueden, pero sobre todo deben, ejercer su derecho a ser padres en igualdad de condiciones que cualquier hombre o mujer sin discapacidad’ [Parents with disability are publicly judged, not only by the judicial process, but also by social services and even society in general, as people who do not have the same right to be fathers or mothers since they have been previously judged to be unfit (or less fit) to do so. It is necessary to combat these prejudices (p.32) and prevent infringements of this right, making clear and respecting that people with disabilities, if provided with the necessary support, can, but above all should, exercise their right to be parents in conditions equal to any other man or woman without disability] (30).
(12) The organization Down España, whose website boasts the slogan ‘Autonomía para la vida’ [Autonomy for life], has the following to say: ‘En DOWN España consideramos que la promoción de la vida autónoma debe ser uno de los pilares fundamentales en los que se asiente cualquier programa o legislación referida a las personas con Síndrome de Down’ [At DOWN España we believe that the promotion of an autonomous life should be one of the fundamental pillars upon which to base any program or legislation relating to people with Down syndrome] (www.sindromedown.net/index.php). Article 19 of the UN Covention underscores the ‘Derecho a vivir de forma independiente y a ser incluido en la comunidad’ [Right to Live Independently and To Be Included in the Community] (www.sindromedown.net/adjuntos/cPublicaciones/57L_guia.pdf).
(13) One study from 2009 reported that the unemployment rate for people with intellectual disabilities in Spain was at 60% (Hirtz).
(14) ‘Social models of disability tend to emphasize the contribution of specialist services to this exclusion [of people with disabilities], which was particularly evident during the era of the long-stay hospitals. Even so, it has become apparent that physical presence within a community does not guarantee greater social inclusion. Taking part in activities, and using local facilities, does not necessarily lead to meaningful social contact with others, particularly the non-disabled population’ (276).
(15) The Spanish films Vida y color (2005, by Santiago Tabernero) and Te quiero, Eugenio (2002, by Francisco José Fernández) feature characters with Down syndrome as well (Fragueiro 19). As my disappointing experience with the 2003 volume La discapacidad en el cine (by Olga María Alegre de la Rosa, discussed briefly in a note to the Introduction) conveys, there has yet to appear an effective encyclopedic work detailing the representation of disability in Spanish film.
(16) In yet another scene (approx. 39:40), Olvido goes upstairs, taking her bathrobe off halfway up, and León returns to the stairway again and again, hoping, perhaps, to see her naked. She then comes downstairs wearing only her underwear to put on a dress in front of him. After asking if she looks pretty in it, she takes it off and puts on another dress, asking if he likes her more in the second one. Also, when she picks him up at the Civil Guard station after having abandoned him, the female guard tells her that her brother ‘tiene una gran virilidad’ [has a large male-organ].
(17) It is similarly unconvincing that at one point he mistakenly uses the word ‘meses’ [months] instead of ‘días’ [days] when stating that he is still new to the school (21:18).
(18) The classroom scenes vertebrate the film. In another such scene, León (26:43) stands at the board explaining a logical sequence (‘Todos los hombres son mortales. Sócrates es un hombre. Luego Sócrates es mortal’ [All men are mortal. Socrates is a man. It follows that Socrates is mortal]). Another episode features Raquel, the teacher, instructing the class on dancing (53:35–54:27, yet another commonality with Yo, también). A later shot of the same (p.33) class shifts from fast music to a slow dance (56:00–56:44), and we see Raquel dancing with her arms around Jonathan, her head on his shoulder.
(19) The opening credits of the film point out that Larralde has won the Globo de Cristal a la mejor actriz (Karlovy Vary International Film Festival), the Premio a la mejor actriz (Festival de Cine Independiente de Ourense [España]) and the Premio a la mejor actriz (Black Nights Film Festival [Tallinn/Estonia]). The director, Xavier Bermúdez, has also been the recipient of a few awards, but Jiménez notably has not.
(20) The reason she gives the shopkeeper for needing the job so badly is that ‘Tengo un hermano mongólico a mi cargo’ [I have a mongoloid brother in my charge].